Wednesday, December 06, 2006

Christmas in Hiding

I got an e-mail at work inviting me to attend a holiday luncheon, with classical music from a concert band, to benefit a local charity. I would be sitting at a table with a group of people from my company, including a director I didn't know personally.

After considering it for a few minutes, I politely begged off, saying that I had other plans (which were, in fact, nonexistent). This decision wasn't based on an aversion to socializing, or anything like that; I enjoy classical music, and I don't feel shy about eating in public. In past years, I probably would have gone to the luncheon and enjoyed it—but unfortunately, things have changed.

When I interviewed for my job a few years ago, I expect the hiring manager saw me as a capable, qualified, well-educated person with a mild speech impairment. Now, thanks to the onslaught of "autism awareness" propaganda from so-called advocates like Autism Speaks and the Autism Society of America, every time I meet a new person there's an ever-increasing chance that he or she will be sufficiently "autism aware" to view me as a mentally disordered burden on society, et cetera. As a result, I'm not going to have any schmoozing with corporate directors on my Christmas agenda this year.

This reminds me of a conversation that I overheard as a child about an ugly incident of holiday office party bigotry. A young, up-and-coming manager, who was white and well-respected, made the mistake of bringing his black wife to the office Christmas party. The others at the party all smiled politely and greeted her. But by the next day, everyone in town was gossiping about how this guy had committed career suicide, and what a fool he was for not knowing better.

I'm not sure if America's witch hunt against its autistic minority population has gotten so extreme that an autistic employee ought to know better than to attend a holiday luncheon and sit at a table with a director, but I'd rather not take the risk of finding out the hard way.

17 Comments:

I think you might have made the right decision. It's scary to think that being autistic in public could have more serious consequences than just being really odd in public, with the behaviors being the same in both instances.

After all, an odd person might make one uncomfortable, but an autistic is an empty shell. Thanks, Cure Autism Now!!

...every time I meet a new person there's an ever-increasing chance that he or she will be sufficiently "autism aware" to view me as a mentally disordered burden on society, et cetera. As a result, I'm not going to have any schmoozing with corporate directors on my Christmas agenda this year....

Hello,

Long time no post, I hope you are all well and enjoying life. I have been incredibly busy and have had to deal with some personal family issues that have taken up too much of my time.

I just wanted to comment on two things. first, I think you are mistaken by not attending the event (if you would "normally" attend the event) just because you think there might be someone there who has a perception of autism that you disagree with. This is equivalent to saying "I won't go to a party because there might be a racist there," You may be assuming more that you should, and by letting your assumptions affect your choices, you lose. I thought you were proud of yourself, and the only way you will ever truly feel like a part of society is to be a part of society. Self-exclusion is tantamount to admitting the people you stand against are correct. Don't reinforce them!

Second, I wanted to tell you a story about an encounter I had today that made me painfully aware of my own prejudices and cultural assumptions. I was asked to write a behavior support plan for a young African American teen - 15 going on 16. He was diagnosed in the record with Borderline MR, Oppositional Defiant Disorder, and Pervasive Developmental Disorder. His target behaviors included physical aggression, noncompliance, property destruction, verbal aggression, impulsivity, obsessions on cartoons, and extreme disrespect toward females. I reviewed the record, and my initial impression was that he was a young "thug", a hiphop wanna-be that spent too much time watching rap videos and was probably headed into the legal system pretty soon (he has charges of assault on a teacher, and she is pressing). We talked for about an hour, and over the course of the conversation it hit me - he was an Aspie! Every negative assumption I had was wrong, and his various "diagnoses" were all attributable to some aspect of Asperger's syndrome. EVERY clinician who had seen him in the past 15 years had missed it, and as a result he was living in a hellish situation. By the end of the session he was smiling, talking to me and expressing himself in a very "normal" manner, and I think that things will change significantly for him once others understand what his true diagnosis is. If nothing else, they will be expected to make more appropriate accomodations for him, and structure his educational experience around his unique abilities and challenges.

I learn so much about myself from these individuals, and I am amazed at how well we relate once there is a shared awareness of their situation.

I had an ugly reality check the other day...my 8 year old knows about autism, we're careful to explain pro's, con's, blah blah, without medicalizing it to him. I thought that was something that would be positive for him, as he was aware of his 'difference' from other children, was expressing distress about it, and it seemed better to explain than leave him wondering what was up and blaming himself for his difficulties. As I had done for so many years...

I'd been counting my lucky stars we live in a place where 'autism awareness' isn't being tossed in our faces everyday, no scare tactics on the backs of cereal boxes, PS announcments on the tube, etc...

Watching the news at dinner the other day, a piece came on about (I think it was stem cell research?) and how it might be used to cure all sorts of horrible diseases...including autism.

Son looked at me..."Hey, I have autism."

Puzzled. He looked at me.

He's autistic, not unaware.

It's becoming harder to protect ourselves and our children. I thought we were relatively safe from this stuff, but we're not.

I don't blame you for hiding; at the same time I wanted to free myself and my child I'm learning the dangers of doing so.

My son also looks at the TV when those Autism Speaks comercials are on. I am pretty vocal about talking about the curebies though.

I agree about not hiding though if you would have gone anyone - unless this is something you really feel you need to do for your career. After years of being a handwasher it is not something that I can hide very well - although I do wear gloves quite a bit - it is not always practical so people can usually look and wonder. I saw an aquainatance a number of years ago and I noticed she ket staring so I just told her and we moved on to other conversation. If we hide then peopel really don't get to see the "real" people - they only get to see the stereotype. Of course that is ONLY if you are comfortable because I also think it is everyone's right to not discuss this if they don't want to or depending on their mood.

McEwen: Much appreciated... I think we all could use some of that rhino hide nowadays.

Mimi and Mum is Thinking: Yes, it's very scary to think about how much prejudice is out there. Usually I try not to let myself get intimidated, but I've been feeling a bit of depression recently (probably seasonal), which makes it harder to get out from under all those looming shadows.

James: Thanks for the advice about being careful with assumptions. People often do let their assumptions affect their choices to an unreasonable extent. I know an older black man who is retired now, but when he was working, he never socialized with white co-workers. This was because he had seen a news story many years ago about a black man who was invited to a picnic by white co-workers as a pretext to get him alone in a park and lynch him. Looking at it objectively, the risk of something like that happening was very small, probably less than the risk of getting hit by lightning in one's own back yard... but in this man's mind, it was a very real fear.

Anonymous: You're quite right that it's important for society to see the real people, rather than the stereotype... well put.

"first, I think you are mistaken by not attending the event (if you would "normally" attend the event) just because you think there might be someone there who has a perception of autism that you disagree with. This is equivalent to saying "I won't go to a party because there might be a racist there,"

Sorry, that's not how I read that situation. This has nothing to do with a difference of opinion on views of autism. This has to do with weighing up the risks of unemployment if the management get the notion that this person is autistic and therefore unemployable and never mind that this person has been an exemplary employee up to that time. Put the 'gee this person is different' together with standard social networking and the chances of coming up with 'pariah' are really very good. I find your analysis somewhat naive.

Alyric: I thought he was just saying that a person shouldn't automatically assume the worst, but you may be right that he misread the situation. You are, of course, correct that this is all about the risk (however large or small it may be) of ending up as an unemployed pariah.

...This has to do with weighing up the risks of unemployment if the management get the notion that this person is autistic and therefore unemployable and never mind that this person has been an exemplary employee up to that time...

Interesting point, although I think the original blog could be interpreted either way, I just saw it as a "self-forced withdrawal" as opposed to an "aversive avoidance". I hope that makes sense.

There is a sense of cognitive dissonance in part of your statement that I am having a hard time understanding. If the employee was "exemplary" up to this point and all of a sudden they are deemed "unemployable", wouldn't that be illegal and unethical? Wouldn't that be grounds for a lawsuit? Granted, I know a bit about how the corporate world works (which is why I refuse to be a part of it), and the "risks" are real in every sense. However, my point was that if the person actually "wanted" to go the the event, but avoided going because there was a perceived "risk" of being ostracized and ultimately terminated, that simply reinforces the dysfunction in the corporation, doesn't it? If you all believe in your rights to "be who you are", you have to take risks in order to challenge perceptions. I'm not trying to be arguementative here, and I think the other points are well made, but does hiding truly make things better, or just easier?

James - Behavior Analyst said:"I'm not trying to be arguementative here, and I think the other points are well made, but does hiding truly make things better, or just easier?"

I think this is important to discuss because this is often a decision that lots of people on the autism spectrum (or with other conditions like some that fall under the catagory of mental illness) have to make as far as how much to disclose or how "normal" to make yourself be seen. It really doesn't matter how exemplary you are or intelligent you are - labels can and do effect peoples' perceptions of others. And that is hard to reconcile knowing that someone might think you are an equal but that could change (because most have seen it before) once they find out a person has been tagged with a label.

That does not mean that anyone should have to hide, but that it makes it a very personal choice. Some people have no problem most of the time but with the autism awareness stuff it makes a person more noticeable where others might not have questioned anything before. And when it somes to matters of employment there are factors like insurance costs and safety issues (based on stereotypes and misperceptions) that may be more of a factor to the employer than any exemplary service.

"There is a sense of cognitive dissonance in part of your statement that I am having a hard time understanding. If the employee was "exemplary" up to this point and all of a sudden they are deemed "unemployable", wouldn't that be illegal and unethical? Wouldn't that be grounds for a lawsuit?"

You are absolutely right, and that's why a couple of rather well known autistics had some very public law suits going. How one goes from being exemplary to the opposite seems to be some social mechanism in operation.

"if the person actually "wanted" to go the the event, but avoided going because there was a perceived "risk" of being ostracized and ultimately terminated, that simply reinforces the dysfunction in the corporation, doesn't it?"

True, but in some circumstances it may not be the most pragmatic thing to fight it, what with mortgages and other living costs - not to mention trying to find another job. Maintaining a low profile is not necessarily a bad thing.

"If you all believe in your rights to "be who you are", you have to take risks in order to challenge perceptions."

True and I'd like to pick the venue. This is a tough ask. The risk you know is all one sided, and to date the data in support of disclosure is not reassuring.

No, hiding isn't good but it would depend on a lot of factors whether coming out of the closet is such a good idea. I'll bet gays had just the same dilemma a couple of decades ago.

A little scenario to illustrate.

People love to gossip and I use that term in it's proper sense - talking about the people they know to the people they know - not usually in the derogatory sense though we know that this can be, given the person or the circumstance. This is a very normal social thing - equivalent to grooming among primates. it does all sorts of things including cementing and maintaining people in social groups and networks. It also has a protective effect. Gossip is tempered by other gossip because all the social beings in any environement are gossiping and there is some extinguishing going on - just so long as all the parties have a different view. If all the people have a similar view, however, then the subject under discussion is sunk. That's what happens when a 'not very nice person' is gossiped about. They may acquire pariah status but that would depend a lot of what power they have in the power structure. Nasty but influential people don't become pariahs.

Now - lets see what happens when some observant soul recognises that Daphne is 'different' and does a whole lot of things that are weird enough to attract notice. Actually, it's probably going to be a case of things she did NOT do that are going to start this chain of events. What are the folks going to do about it? They're going to gossip. Did you notice Dear Daphne and 'x' and before you know it, people are comparing Daphne's exploits from yesterday to today or last week and she's become a regular fixture on the gossip circuit. Are these people being mean and nasty? Nope - they're being social. The problem is that the checks and balances on two fronts are missing. There is no counter gossip that might defuse the situation because guess who is not a part of the gossip circuit? - Daphne. So the gossip escalates and pretty soon, like a game of Chinese whispers, what Daphne actually did/did not do or say bears no relation to what is said about her. Whether things get this far depends on a lot of things, but it's not uncommon and especially so where education levels are medium to average. If people always equate difference with defective in their mind and as has been amply demonstrated, quite nice human beings can be persuaded to do all kinds of nasty things because of social imperatives, then I think you can see that dear old Daphne doesn't really have much of a hope. These things are fixable but in this age of overvaluing conformity, it's that bit more difficult.

...one could say that all kinds of prejudice involve some amount of cognitive dissonance, in that the reality and the stereotype don't match.

This would make an interesting topic for a post...

Be sure to do a little research on Leon Festiger's amazing work on cognitive dissonance, it will blow you away.

I really appreciate the polite yet assertive and honest level of discussion on this thread. It is so much better than the awful name calling and insults that offended me here in the past, and partly kept me from following along like I wanted to. To discuss the issues with people who are living the issues opens up a different view for me, and I need it.

There are so many parallels between living with ASD and being an ethnic or sexual orientation minority, and the problems are quite similar. I have not seen a comment yet that I could comfortably say "No, that's not true" to, and you are making me think.

"I have not seen a comment yet that I could comfortably say "No, that's not true" to, and you are making me think."

Good. I have been meaning to write about this (for about two years even). I'm terrible at meaning to do something and it sorta happens after a realy long time and that's when its important. Otherwise it may not happen at all.

The impetus to write about this is that there is so much stuff on 'social skills' that is just wrong - well meaning but wrong because it never really explains the why of anything. I said on the AWARES site back in 2005 that autistics need reasons not rules. When you know the whys of situations then you can figure the hows, but that's not what the folks are given. So, yep there's a lot that needs to be written about here.

Thanks for the Leon Festiger tip. I shall put him on my Christmas list.

There's another behaviour analyst who's a favourite of our little community - Jonathon aka Interverbal. He's the loveliest person - so civilised to argue with and the extraordinary thing is that pretty much all of us really don't have much time for behaviourism. Strange world, non?

Behaviour Analyst: "I learn so much about myself from these individuals, and I am amazed at how well we relate once there is a shared awareness of their situation."

I think (as an educational psychologist) that this is how life is: we do indeed learn about ourselves from other people, and the social psychological explanations of how we understand ourselves as individuals back this up. What you describe is very much to do with focussing less on what is different (whilst not ignoring it) and going instead with the things that make the 'us' and 'them' categories broadly similar... does that make sense?

Behaviour Analyst: "However, my point was that if the person actually 'wanted' to go the the event, but avoided going because there was a perceived 'risk' of being ostracized and ultimately terminated, that simply reinforces the dysfunction in the corporation, doesn't it?"

Sadly, whilst I deplore that aspect of human nature in organisations, I have to say that your point is absolutely correct. I so wish it weren't (and not because any feelings of antipathy towards you... I hope that my feeling of our mutual having gotten past that is a valid one; I remember us last interacting here on a much better footing that we set off on!).

Behaviour Analyst: "Be sure to do a little research on Leon Festiger's amazing work on cognitive dissonance, it will blow you away."

Doing my studies for the CertSocPsychol at Leeds, I read a lot about Festinger's work. And I am absolutely gobsmacked by it still... some 10 years after I first read of it. He was a student of Lewin (whose model for understanding things came to be one of the many things that earned me a Master of Education degree, with Distinction).

It's so easy in applied psychology (be it clinical, educational, forensic, occupational or whatever...) to lose sight of the immense scope of applicability of the work of social psychologists in what we do. Your remembering of this work reinforces the sense of hope I felt for your clients last time we were interacting here. I know it may seem silly, but I do feel that losing sight of social psychological knowledge can lead us only downward, in terms of the quality of our work. Just ask Bandura... I'm sure he'd agree.

Behaviour Analyst: "Long time no post, I hope you are all well and enjoying life. I have been incredibly busy and have had to deal with some personal family issues that have taken up too much of my time."

Well, for my part, life is slow but going in a good direction. I can relate to the family issues thing (got a couple of those going on just now: my dad - who showed me how to have a great time learning stuff - is dying), and I really hope that those issues don't get you down as much as such things can do...

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This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010